21 Struggles Only Gluten-Free People Understand

Jenny Finke
Woman wearing a tshirt that says "Dear Gluten, We are never ever getting back together."

I’ve been gluten-free for nearly eight years. It’s been so long that I can hardly remember what life was like before celiac disease.

However, every day that I’m gluten-free, I’m reminded that it’s not easy being gluten-free. No, it’s not. There are real struggles gluten-free people have to face day-in and day-out. The struggle is real.

When you eat gluten-free — and when you are serious about eating gluten-free — you need to avoid all gluten. A low gluten diet will not benefit you, nor will a cheat here and there. Even just a crumb of gluten can set off an autoimmune attack in people with celiac disease, and can create chronic inflammation in those with non-celiac gluten sensitivity (and inflammation leads to disease). Even just a crumb of gluten can undo all of your hard work to reclaim your health and heal your body.

Again, it bears repeating that eating even a little gluten, regardless if you have celiac disease or if you are just gluten sensitive, will put you at risk for more autoimmune diseases, cancer and early death. You must avoid gluten at all costs if you truly want to benefit from the gluten-free diet.

Related:To the People Who Think I'm 'Exaggerating' My Celiac Disease

Unfortunately, most gluten-eating people have little sympathy for the plight of a gluten-free dieter, mainly because they think the gluten-free diet is just a fad diet, or maybe they dis the gluten-free way of life because they want to feel better about the fact that they continue to eat gluten (even though gluten has been proven to create inflammation in all humans).

Whatever the case, gluten-free people face daily struggles to find gluten-free food, resist temptation to “cheat” on our diets, brush-off ridicule and ignore bad advice. We have to continue to justify the way we eat as we live in a world void of sympathy for the gluten-free eater.

Today I’d like to share with you 21 struggles that I think only gluten-free people will truly understand. Do you relate to any or all of these struggles?

1. Paying More for Less Food

Have you ever noticed that pizza places offer gluten-free pizza, but they give you a smaller pizza pie and charge you $2+ extra just because it’s gluten-free?

Related:5 Emotional Burdens That Come With Celiac Disease

“I like paying more for less food,” said no gluten-free person ever!

2. I’m Not Trying to be Difficult, But…

If a salad comes with croutons mistakenly placed on it, I have to send it back. Not even a crumb of gluten can touch the plate and, no, I can’t just pick off the croutons. The same goes for burgers — I cannot just remove the bun and eat it because even a tiny bit of gluten causes an autoimmune reaction in my body. No thanks!

I’m not trying to be difficult when I send my food back and request one made (sans croutons or bun), but I sure do sound like a diva!

I’m also not trying to be difficult when I order a gluten-free meal and ask a million questions. I’m just trying to eat in a way that is good for me. A little understanding and accommodation goes a long way in helping me do that (and feel normal in the process).

Related:17 Unusual Requests That Help Those of Us With Celiac Disease

3. Um, Rice is Actually Gluten-Free

Eating out when you’re gluten-free is full of fraught and frustration. So many servers have told me I can’t eat something because it has rice in it, however, rice is gluten-free.

Few people truly understand what is and isn’t gluten-free, so every time we eat out, we have to take precious time explaining and educating the staff on what we can and can’t eat. It’s exhausting.

4. Yes, I Have a Dozen Different Flours in My Pantry

Baking used to be so easy. I used to have just one flour (all-purpose wheat flour) in my pantry. But now, as someone who bakes exclusively gluten-free, I need and use a lot of different flours just to create the same cookies and breads as I used to do so easily back then.

I even have a container of xanthan gum in my freezer too — something I hadn’t heard of in my pre-celiac disease days.

Only gluten-free people understand the need for a variety of different flours, starches and gums to get a recipe to taste right and have the right texture and mouthfeel. And only gluten-free people have pantries full of quinoa flour, millet flour, rice flour, potato starch, tapioca starch, guar gum, etc.

5. Wait, There’s No Food For Me?

All us gluten-free folk have been in this exact situation. We’re at a wedding, special event or work conference and yep, there’s plenty of food for everyone else, but no gluten-free food for us (even if we requested it ahead of time). Ug!

This is a total bummer and an all-around uncomfortable situation for everyone.

The host didn’t think of me. My friends feel uncomfortable eating in front of me. And I’m stuck eating the emergency granola bar I keep in my purse for times like this — ho hum.

When I traveled to abroad earlier this year, I thought I had done everything right to ensure my tour operator would provide gluten-free meals with me. I contacted them ahead of time and spoke with several people to ensure I would be able to eat during my 10-day trip where I’d be at the whim of a tour operator.

What I found when I got to my destination was a whole ‘nother story. I was hungry, frustrated and emotional as ever. There was, alas, no food for me.

Gluten eaters just don’t understand the emotional toll the gluten-free diet takes on us, especially in high-stress, out-of-the-normal type situations. These are times when I can’t eat at home nor can I survive on granola bars.

6. It’s Good Even Though It’s Gluten-Free

My cooking and baking gets judged by gluten onlookers often. “It’s not that bad,” I’ll hear, or “I could eat this if I had to.”

Geez, thanks for your (gulp) compliment.

7. Where’s the Bread?

If you find a decent gluten-free bread, I’d really like to know about it, please.

While I do enjoy a few brands of gluten-free bread — like Schar, Canyon Bakehouse and Outside the Breadbox (Colorado only) — bread is not the same as it once was. I do find toasting gluten-free bread makes a world of difference in taste.

8. Eating at a Friend’s House

While it’s nice to get invited to someone’s house for dinner, for those of us on a gluten-free diet, eating at someone’s house is a big source of anxiety and a lot of work.

There’s a lot of explaining and planning that goes into these rare occasions. I often find myself spending the day cooking in order to bring a few safe dishes to my friend’s house. I rarely get to sit back and simply get hosted.

9. There’s Never a Break From Being Gluten-Free

While people on a variety of diets will allow themselves “cheat” days, or they don’t fret if they ate something outside of their diet parameters, there’s never a break from being gluten-free for those of us with celiac disease or non-celiac gluten sensitivities.

We can’t eat just a little gluten and be OK. Ever. We constantly have to think about what we can and can’t eat. If you’ve ever said, “I’m just gluten sensitive (not celiac) so I can have a little gluten,” you are sorely mistaken!

When someone offers me a piece of gum, I can’t just take it without reading the label first.

When I’m offered peanuts on an airplane, I must first read the label to make sure the manufacturer didn’t decide to add gluten to the mix.

When I go to a wedding, restaurant or conference, there’s no break from having to discuss my diet with many people to ensure I get to eat alongside everyone else.

There’s never a break from the gluten-free diet. Period.

10. No Dedicated Fryer?

I love french fries, so when I go out to eat and the restaurant does not have a dedicated fryer, I can’t help but feel a little bummed. OK, I know this struggle sounds silly, but I love french fries and it’s my reality.

Remember, gluten-free eaters like french fries too, but we can’t eat ’em if they’re cooked in a shared fryer that contains oil used to cook foods containing gluten (like chicken nuggets). I just wish restaurants would keep their naturally gluten-free french fries gluten-free, please!!

11. Planning Your Day Around Grocery Shopping

Until you’ve been gluten-free for a few years, grocery shopping is such a chore… a long chore. There’s no such thing as quickly shopping for groceries for the week. When you’re at the grocery store, you’re at the grocery store for a while.

On top of that, one grocery chain has the exact gluten-free bread you like, but the other grocery chain carries the gluten-free pasta you like. It’s exhausting to have to shop at multiple places just to piece together a decent meal.

12. “Gluten-Free Friendly” and “Gluten-Conscious” Menus

I hate “gluten-free friendly” and “gluten-conscious” menus. Blech. Restaurants use these confusing terms to get out of offering safe gluten-free meals for those who need it most. Hello Panera?

To me, these restaurants are just trying to cash in on the gluten-free “fad” without providing a safe meal for those of us who need it most. Shame on you.

Please, restaurants, just tell me if my food can be prepared gluten-free or not. Please don’t give me the runaround about whether or not my meal can safely be prepared gluten-free. I just want to eat something safe and feel normal, OK?

13. Domino’s, Papa Murphy’s and Papa John’s

These pizza joints offer gluten-free pizza that isn’t really gluten-free. These restaurants are using a gluten-free crust to market their gluten-free pizzas (and charging more money for the gluten-free crust), yet they’re taking no precautions to prepare a pizza that is truly safe for someone with celiac disease.

Papa John’s even says that people with celiac disease should not eat its pizza. Huh? So you admit you’re just cashing in on the gluten-free trend without care for those of us who need to eat gluten-free to survive, Papa John’s?

Quit teasing me with food I can’t actually eat. You suck. Yep, I said that.

14. Why Put Gluten in Rice Krispies?

You know what, if you make a product whose main ingredient is “rice,” it should be a law that it must be gluten-free. Please, please, please leave all rice products alone. Rice doesn’t deserve to be glutened!

Honestly, it’s so darn confusing when manufacturers like Kellogg’s add things like barley malt to Rice Krispies, a product that should be a naturally gluten-free product but isn’t. At least we have gluten-free alternatives.

15. Stop Calling My Diet a Fad Diet!

Being gluten-free is no fad to me nor the millions of people who have diagnosed celiac disease or who struggle with non-celiac gluten sensitivities. Quit calling it a fad and thinking it’s OK to poke fun at us — just stop. Gluten-free is not a fad diet.

16. Having to Always Bring Food

It’s such a drag to have to bring along my own food on trips and to events. I just never know if there will be safe food for me so I have to do it, but again, there are only so many foods you can pack for a two-week trip to nourish your body. At some point you need real food.

While I usually request a gluten-free meal at conferences, events and on airlines, I never know what is waiting for me on the other side. We always need to be prepared.

17. You Only “Think” It’s Gluten-Free?

I was at an event (where I requested a gluten-free meal three times ahead of the date), and yet the plate of food placed in front of me came with this caveat, “I think it’s gluten-free. I did my best.”

Wait, you only think it’s gluten-free? You mean you don’t know for sure?

Come on, people. I need a little more assurance than that. I don’t put food in front of my guests and say, “I think it’s edible,” or “I don’t remember if I put arsenic in it, eat up!” Please don’t just think it’s gluten-free, know it is. Thank you.

Also, while I’m on the topic, it’s always nice when my food is wrapped or contains a toothpick that says, “gluten-free” or “allergy.” This way I have some peace of mind knowing that this is the gluten-free meal or dish I asked for. It’s easy to confuse meals in a busy kitchen.

18. Sad Desserts

I appreciate people trying to accommodate me with an entire gluten-free meal, but sad desserts (like rice pudding and vanilla almond cake) make me sad, especially when everyone else is enjoying molten lava cake or fudge brownies doused in raspberry sauce. I’d love a piece of chocolate, too.

19. Feeling Isolated

It’s easy to fall into a pity party for one when you’re the only one that eats gluten-free. It can feel so lonely when you’re the only one looking for a special accommodation and everyone is already moving on to dessert.

This happened to me during my trip abroad. Everyone on my tour was enjoying appetizers, breads, noodle salads, stews and breaded chicken while I waited (and waited) for that special gluten-free meal promised to me. After a long wait and after feeling so alone (and hungry) while everyone indulged in beautiful foods, a sad piece of chicken on top of bean sprouts was placed before me. It made me cry.

I hate sitting there like a sad lump while everyone is indulging in beautiful foods. It makes me uncomfortable, and it makes the people at my table uncomfortable.

I recently attended a special event and of course requested a gluten-free meal (if possible). The caterer assured me it was possible and a meal would be provided. Great! A ton of courses of food came out of the kitchen… but still nothing for me. The others at my table didn’t know if they should eat or wait for me. It was uncomfortable to say the least!

Before I could even tell everyone to go ahead and eat without me, one woman at my table said, “I like gluten so I’m going to go ahead and eat.” Her comment made me feel awesome — not! It’s no fun watching others eat while you just sit there. No thanks.

20. Fake Gluten-Free Eaters

When well-meaning friends tell me they eat gluten-free too, I of course think they’re serious about it. I even go out of my way to bring them gluten-free goodies and support them however I can.

But then I get so confused because I’ll see them eating a bite of gluten, or talking about how they still eat gluten from time to time.

Obviously they can do whatever they want… but what they don’t realize is that their wishy-washy actions affect me. They are making me look like a fool. I hear this all the time: “My friend Heather eats a little gluten from time and time and is OK. How come you’re not?”

How am I going to get servers, caterers, friends and family to take my diet serious when others are OK eating gluten on their so-called gluten-free diet? I don’t get it.

21. Ill-Informed Doctors and Advice

My whole life I thought my doctor knew everything… but I now realize I have been sorely mistaken. Doctors do not know everything, especially when it comes to celiac disease, gluten sensitivities and nutrition. In fact, doctors have received very little nutrition training. The bulk of their training is in pharmaceuticals.

One doctor made my blood boil. He told my friend going gluten-free would give her diabetes (gulp!). This is not true, and actually, quite the opposite is a more likely scenario.

Another doctor tried to scare me by sharing this awful, inaccurate study that tried to prove eating gluten-free would result in heart disease. It doesn’t.

The struggle to find a doctor who “gets it” is hard. I suggest working with a functional medicine doctor or finding a doctor who has studied gluten disorders and nutrition in earnest. Stop placing blind faith in all doctors. Many of them don’t get it and still believe the gluten-free diet is a just a fad (and they’re the ones still recommending low-fat, grain-heavy diets to their patients).

Please note there are great doctors out there who get it. You just need to find them.

Am I Speaking Your Language?

I have a feeling, if you eat gluten-free like me, that you have faced many (or all) of these struggles. Am I right?

The struggle is real, my gluten-free friends, the struggle is real.

I’m curious, which one of these struggles resonates with you the most? Are there other struggles you face as a gluten-free dieter that I did not include on this list? Please send me a note to share!

Follow this journey on Good For You Gluten Free

Read more stories like this on The Mighty:

11 Things People With Celiac Disease Do That Seem 'High Maintenance,' but Actually Aren’t

15 Things I Wish People Knew About Having Celiac During the Holidays

6 Ways to Manage Food Intolerance This Holiday Season